The United Kingdom National Registry for Myotonic Dystrophy

Recruiting now

Conditions studied: Myotonic Dystrophy

In brief

Myotonic dystrophy (dystrophia myotonica - DM) exists in two forms, usually referred to as DM1 (type 1) and DM2 (type 2). Both conditions are genetic disorders but each affects a different gene. DM1 is the most common adult-onset muscular dystrophy, and is thought to affect at least 1 in 8,000 people worldwide. The aim is to facilitate a questionnaire based research study in order to better characterise and understand the disease in the UK. By maintaining a national registry this will help identify potential participants eligible for clinical trials in the future.

Key facts

Study ID

NCT04003363

Run by

Newcastle University

People needed

900

Starts

2013-05-01

Expected to finish

2030-12-01

Last updated by the study team

2023-12-04

Who can join

Age: any. Sex: any. Healthy volunteers: not accepted.

You may qualify if…

• All patients with a confirmed Myotonic Dystrophy diagnosis (or pending diagnosis) are eligible for inclusion. Diagnosis will be confirmed via genetic testing results

You may not qualify if…

• There are no exclusion criteria for the registry

Where it is running

• John Walton Muscular Dystrophy Research Centre — Newcastle upon Tyne, United Kingdom (enrolling)

Full record on ClinicalTrials.gov

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